Choice and Control Within Family Relationships: The Lived Experience of Adults With Intellectual Disability

Intellect Dev Disabil. 2018 Jun;56(3):188-201. doi: 10.1352/1934-9556-56.3.188.

Abstract

Increased choice and control is a driving force of current disability policy in Australia for people with disability and their families. Yet little is known of how adults with intellectual disability (ID) actually experience choice and control within their family relationships. We used interpretative phenomenological analysis of individual, semistructured interviews conducted with 8 Australian adults with ID to understand the meaning given to their experience of family support received around choice and decision making. Three themes were identified: (1) centrality of family, (2) experience of self-determination, and (3) limitations to choice and control. The participants identified trusted family members from whom guidance around choice and decision making was both sought and received, often involving mutual decision making and limitations to control.

Keywords: adult; family relationships; intellectual disability; self-determination.

MeSH terms

  • Adult
  • Australia
  • Decision Making*
  • Family Relations / psychology*
  • Female
  • Humans
  • Intellectual Disability / psychology*
  • Male
  • Middle Aged
  • Personal Autonomy*
  • Qualitative Research
  • Social Support
  • Young Adult